Vol. No. Vol. 2418No. 17 27
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Wednesday, October January 27, 13, 2021 2016 Wednesday,
WHATEVER IT TAKES: Pomonal’s Billie Wethers, 12, will donate some of her bone marrow to her younger brother Bodhi, 6, in the hope it will prevent his health from further deteriorating due to an extremely rare disease. Picture: PAUL CARRACHER
‘I love him’
BY SARAH MATTHEWS
A
fter several years of searching for answers, Pomonal couple Belinda and Tim Wethers left Melbourne’s Royal Children’s Hospital in July in utter despair.
When their son Bodhi, 6, was diagnosed with alpha-mannosidosis – a rare, incurable and degenerative storage disorder affecting about 200 people worldwide – doctors ‘pretty much said there was nothing they could do’. “We left the hospital with no hope,” Mrs Wethers said. “They offered to hook us up with Make-A-Wish. It was devastating.” Refusing to accept nothing could be done to stop Bodhi’s condition progressing, the Wethers embarked on their own research. They formed a relationship with the founder of a rare diseases organisation in New Zealand, which resulted in an appointment with an oncologist and ultimately, hope.
John Forman started not-for-profit Rare Disorders NZ in 2000 as a way to help families navigate the health and disability system, while promoting research into rare diseases. “He had two twins with alpha-mannosidosis, but they weren’t diagnosed until their late teens,” Mrs Wethers said. “When we told him the doctors said there was nothing they could do, he got quite angry and said there was something we could do. “He called a contact at the Royal Children’s Hospital and told us we needed to get a referral to a certain oncologist, who could talk to us about a bone marrow transplant. It was too late for his kids to get one, but he has dedicated his life to helping people like us.” Alpha-mannosidosis is a lysosomal storage disorder, characterised by an inability to properly break down certain groups of complex sugars in the body’s cells. The accumulation of waste affects
from the people we’ve spoken to, it’s pretty much his only hope. “If we didn’t do a bone marrow transplant, he’d be in a wheelchair in his 20s with a likelihood of death around 30 or 40, maybe a little later. “Cognitively, he will also continue to decline, as the disease leads to like a childhood dementia. “There is only a small window if you’re having a bone transplant, which is why the sooner they get a diagnosis, the better chance they have. “Most of the families we spoke to said their children would have passed away without the transplant.” After weighing up the risks and making the decision to push ahead with the transplant, Mr and Mrs Wethers questioned how they could speed up the process. After discovering Bodhi’s best match would be a sibling, they spoke to their other four children, Charlie, 14, Billie, 12, Dusty, 10, and Tully, 5, about undergoing testing. “When it came to getting a blood test
many of the body’s organs and systems. Signs and symptoms vary, but often include mild to moderate intellectual disability, hearing loss, weakened immune system, distinctive facial features and ataxia, a failure of muscle control leading to movement disorders. Mrs Wethers said while a bone marrow transplant did not offer any guarantees, anecdotal evidence showed it was the best chance Bodhi had to stop his condition progressing. “Through a Facebook support group, we have been able to form relationships with other families experiencing alpha-mannosidosis or similar conditions and have learnt of their success with bone marrow transplants,” she said. “We’re hoping if Bodhi has one in the near future, it will replace his marrow with an enzyme that actually does work and should stop any further progression. “With his disease being so rare, there is obviously a lot of unknown, but
they were all a bit nervous of the needle, but Billie was probably the most anxious,” Mrs Wethers said. “Of the four, Billie was the only 100-percent match, the others were all a 20-percent match. “When Billie came up as a match, we told her she didn’t have to do it, but she said of course she would, because Bodhi needs it. She said she would do whatever it took to support him. “All of the kids were really brave.” Billie, who is in year seven at Marian College in Ararat, said she was happy to be able to help her brother. “I didn’t think it was going to be me. I thought I’d be the last person to do it,” she said. “It’s pretty surprising and overwhelming at times but I’m glad I can help him. “He’s funny and cute and I love him.” Continued page 5
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